Topics

change doctor
Hello, I am the mother of a 4.5 year-old little girl. We got to know that my daughter has CF; she has to take treatment. She is followed up at a female physician X but the concern is that I don’t get along well with her doctor. She speaks to me badly and reproaches that I do not care for my daughter because she has a language delay. Does she have the right to talk to me like that? Can I change my doctor? Thank you for giving me an answer because I admit that I had stomachache every time I see her.
15.07.2013
Wood granule sealed stove
We have a son who has CF. We plan to buy a wood granule sealed stove. What do you think about this choice? I would like to get a medical advice, thank you.
15.07.2013
Diagnosis
Hello, our son was born via cesarian section due to fetal ascites in case of meconium peritonitis due to meconium ileus and volvulus. The genetic investigation showed a mutation in exon 10 of the CFTR gen c 1521_1523del (p.Phe508del) and in intron 10 of the CFTR gene c1585-1G>A (c1717-1G>A) heterozygous. Are there any experience reports in case of such a course about the ongoing course and the prognosis? Until now everything went actually without complications, he was born in the 35th week of gestation and had not to be intubated, also he tolerated well the operation, only the enteral feeding was problematic (slowly with mothermilk).
15.07.2013
Flight duration
I had 2.5 years ago a pneumothorax, can I nevertheless go on an 11-hours flight without fear?
15.07.2013
Saliva in cystic fibrosis
Hello, For quite some time I am interested to learn why the saliva in CF isn’t more viscous than in healthy persons? Is its composition, amount and viscosity normal compared to the saliva of healthy persons or are there differences? According to Wikipedia the saliva contains the digestive enzyme alpha-Amylase ptyalin which has hardly time to be effective until it is inactivated in the stomach by gastric acid. If there is ptyalin in the saliva – despite CF – does it make sense to chew the food for a long time? Many thanks, S. K. (2x dF508, 48 years)
09.07.2013
prenatal diagnosis
I read on INSERM [institue national de la santé et de la recherche médicale = French national institute for health and medical research] website that the ISET method developed by P.Paterlini-Brechot would be soon available. When? Thank you for your answer.
09.07.2013
vitamins
Hello, should we take vitamins (ADEK) before breakfast or during it? Thank you.
08.07.2013
research
Hello I want to know if there are researches for people carrying one F508del mutation associated with other mutations, because we heard about Vertex’s trials but they apply only people with two F508del mutations. Thank you for your website.
08.07.2013
polymorphism 7T and 9T
Performing the genetic test for 38 mutations of the CFTR gen, it came up to be negative, they detected 7T and 9T polymorphism. How important is this polymorphism, especially from the point of view of diagnosis and clinical examination. Thank you very much.
08.07.2013
CF_the vest
Hello, I am from Botosani [Romania]. I would like to ask a question concerning my 6-year-old nephew who was diagnosed with CF and followed-up by Iasi Hospital. Can you tell me please something about the airway clearance with the vest system? Thank you.
08.07.2013
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